Doubts about Australia’s $A467 million Personally Controlled Electronic Health Record (PCEHR) project have emerged during submissions to a Senate inquiry underway this week in Canberra.

Under the proposed scheme, due to begin operation on July 1 2012, all Australians will have the option of registering for a PCEHR, designed to ensure medical professionals have access to comprehensive patient data.

The Australian Medical Association (AMA) does not believe that requiring patients to “opt-in” to the PHECR will deliver a sufficient uptake to make the system successful.

“Experiences of opt-in systems from Australia and from overseas indicate that adoption amongst consumers will progress slowly,” submitted Dr Steve Hambleton, AMA President.

“If that is the case, in the early days we are concerned that if medical practitioners search for a PCEHR they will often not find one for their patient. This may deter future attempts by medical practitioners and consequently lead to a very low uptake of the proposed PCEHR by medical professionals. We predict it will be many years before the PCEHR becomes ubiquitous in health care.

“When introducing this legislation to Parliament, Minister Roxon said that “studies in hospital environments have indicated that between nine per cent and 17 per cent of tests are unnecessary duplicates” and that “up to 18 per cent of medical errors are attributed to inadequate patient information”. The Government has not discussed the rate of uptake by consumers of the PCEHR that would be necessary to achieve an improvement in these metrics.

“What rate of uptake does the Government forecast? If we can expect that around 10% of the population were to opt-in during the first years of operation of the PCEHR, would that be enough to achieve the objectives in the Bill? To our knowledge, the Government has not presented any supportive data to justify that the opt-in design of the system will deliver an appropriate level of participation.

“A much simpler and more effective design would have been achieved by making the record opt-out. The vast majority of patients want their doctors to have access to their critical medical information so they can receive the best possible care. Consumers with serious concerns about privacy, or an objection to their medical and health information being shared could actively make the choice not to participate in an opt-out system.”

The AMA is also concerned that the medical profession will be stuck with the administrative burden of implementing the PCEHR system.

“Our concern is that the PCEHR may add to the “information chaos” apparent in today’s
medical practices .. this phenomenon is one in which problematic information arrives from many sources and “can impair physician performance, increase workload, and reduce the safety and quality of care delivered.” 7 If doctors have to interrupt their clinical workflow to check if a patient has a PCEHR, and then could find that the information they need is not accessible, this will make it more difficult to deliver quality patient care, not less,” said Dr Hambleton.

The Medical Software Industry Association (MSIA), a national not for profit body, made a submission that included criticism  of the National E-Health Transition Authority (NEHTA).

“The MSIA is concerned “that there are severe penalties in place for breaches of the Act from 1 July 2012 although the Rules are not determined and there will be very short periods of time for the parties to understand and establish procedures for compliance with complex new obligations. Underlying this is the problematic policy decision not to provide incentives or recompense to system participants who are nevertheless expected to contribute extensively to the PCEHR and while doing so, assume significant risk in the event of breaches.

“A detailed description of the function of all participants in the PCEHR system would assist in the clarity of the legislation. Currently the System operator is described in some detail but the specific characteristics and functions of the other participants, such as the portal operators, repository operators and contracted service providers remain unclear and this will make the education of the public difficult. Without education, consumers and organisations are unlikely to take up the challenge of participating in the PCEHR system.”

“There is still a great of deal to be understood about the PCEHR system and how the participants will interoperate. Until there is transparency about what the National Infrastructure partner is building, it is almost impossible for the legislation to accurately cover the issues of privacy, safety and data governance generally.

“It should be noted that unique identifiers are not a new or complex part of electronic systems. Each medical software vendor in Australia runs its own “unique” identifier system and there are literally hundreds in our daily life – licences, tax numbers, passports, bank accounts, memberships etc. This is not the difficult bit of the PCEHR but 18 months after the Healthcare Identifier Service went “live” it is still not functioning safely. It is still unclear what the benefits of these national identifiers are above and beyond those used today if they cannot be relied upon for the reasons stated above.

The MSIA is also concerned that NEHTA is “off all accountability radars.

“It is not listed as a corporation under the Commonwealth Authorities and Companies Act 1997, or as an agency under the Financial Management and Accountability Act 1997.If there is accountability then it must be outside of the Commonwealth purview. “

It believes  NEHTA should be subject to federal FOI legislation, as it is 100% funded by taxpayers and is for all intents and purposes a public entity.

The Royal Australian College of General Practitioners (RACGP) is concerned the proposed PCEHR legislation does not provide a clear governance structure.

Meanwhile, systems integrator CSC Healthcare points out that the proposed requirement not to hold or take records outside Australia will become problematic.

“Consumers will access their data via mobile devices overseas and this will result in data, de facto, being accessed and potentially held or cached, outside of Australia. This may be more effectively

“We assume this section does not seek to limit the ability of consumers to access their data from overseas however this section could be implied as such.

“[Also] there may be existing healthcare providers who outsource their technology to otherwise satisfactory technology companies who manage some of the operations offshore.

The Catholic Healthcare Association (CHA) “notes that the governance structures outlined in the legislation are heavily weighted to public sector providers, and State and Territory governments.

“Forty percent of hospital episodes in Australia, together with the vast majority of primary care and allied health care, is provided by the non-government sector. It is important that the non-government sector be given appropriate weighting in governance arrangements. The legislation as currently outlined does not do this.

The Pharmacy Guild of Australia added its concerns.

“Currently there is no ability for a pharmacy to add a patient’s medication history to the
PCEHR and there is no strategy or process in place at this time to enable this to occur.
ETP is a reality in both pharmacies and surgeries now and as it stands approximately 3.2 million records could be added to the PCEHR weekly through this system.

“The Guild has concerns that the national infrastructure required to underpin the uptake and adoption of the PCEHR will not be ready within suitable timeframes to enable adequate use of the system.

“The Guild is concerned that the Opt-in model chosen will stymie uptake by consumers in numbers that will provide critical mass to the system, given that the range of available features and benefits for both consumers and health practitioners are limited in the initial phases.”

Pseudonyms are worrying to the Royal Australian and New Zealand College of Psychiatrists (RANZCP), which notes “No mechanism seems to have been incorporated in the overall design to resolve issues of multiple records relating to one patient, as seen by the treating health practitioner. Unless there is some mechanism of automatic integration from the provider perspective, it is potentially dangerous to allow the use of pseudonyms for the electronic health record, particularly where this leads to incomplete records.

Dr Adrian Sheen, President of independent association Doctors Action, is concerned about the potential for IT hackers to utilise data from the PCEHR for identity theft.

He also highlighted the closure of Google Health after four years and its failure to identify a desire for patients to have an electronic health record

“Doctors In Action notes the Government proposal for each GP to have a 16 digit identifier, the lack of consultation with GPs about the effect that the PCEHR will have on their consultations, the increased intrusion into the doctor / patient interaction, the cost to GPs incurred by the use of the electronic records and, importantly, clear identification of the benefits that will occur form their use.

“Doctors In Action  believes that the costs associated with a PCEHR will be prohibitive. These costs include accurate entry of information which will require ongoing verification.

“Doctors In Action  maintains that doctors use contextual information for diagnosis, examination and patient management. This is gathered from a structured history. There is no evidence that the use of an electronic record will aid this.

A submission from Tom Bowden, CEO and Geoffrey Sayer, Head of Operations, HealthLink, notes, ”Australia’s Personally Controlled Electronic Health Record (PCEHR) is unfortunately an example of a single focused IT driven effort to create  sharable records, undertaken to the exclusion of other objectives.”

“It is deeply concerning that it is not possible to order pathology tests from two competing pathology providers in any Australian city and get the information back from those providers in a similar format or with the information coded using the same coding scheme. 

“This lack of basic compatibility (and complete lack of implementation of existing available standards) means that it is not possible to reuse pathology information in any standardised manner. It is even difficult to graph this information in a meaningful way to assist in day to day patient care (for example to gauge the effectiveness of a standard treatment regime).  This is an appalling indictment.  Health authorities have continually refused to address these basic, eminently solvable data incompatibilities, this and similar deficiencies while preferring to focus on larger and more ambitious goals.

“Unfortunately, building an electronic health record system without standardised data is somewhat akin to building a temple out of bricks with no straw! (and we all know how that ends up).  All of the countries that have succeeded in building useful eHealth systems (and there are a number) have first focused on basic data quality issues within a standards framework. They have made the use of standards mandatory and they have made standards adherence a mandatory requirement within any procurement process, thereby ensuring that all systems that operate within their health sectors are able to share and exchange information on a sustainable basis.

All the submissions to the ongoing Senate Inquiry into the PCEHR are available HERE: